#92220 03-20-2009 12:24 PM | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Has anyone who endured chemo/radiation had an after effect of their tongue turning different colors? Most of the time my tongue is pink or red, the normal color. Sometimes its a very odd grayish color. Also sometimes it is a little bit tingly and feels a little numb. My cancer was located on the inside of my cheek and back behind my molar, not on my tongue. I understand the scatter radiation can cause some issues. I couldnt see my tongue til now that my teeth have been removed (gotta love the trismus). Just wondering if anybody experienced this. Happy 1st day of Spring, thanks guys 
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Its not thrush either. Ive had that enough times to know the signs and symptoms of thrush. Its really very odd. It comes and goes and turns my tongue gray.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Christine,
Does the tingly and numb feeling come at the same time as your tongue turning grey???...sounds like a blood flow issue to me.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Deb, yes its at the same time. I was thinking the same thing that its something with circulation.
I couldnt see it before since I couldnt open my mouth wide enough to see my tongue. Now without my teeth I can finally see inside my mouth and saw a gray tongue.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I have it Christine and the Dr said to keep my tongue brushed. It is a funny looking red right now, but by midnite it might be that dirty gray again. It is bothersome and pains a lot at times too. Still behind you too. {~~}
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | I get a newsletter that showed a disease of the tongue that was black but not gray. I was a WebMD newsletter that I got last week. Maybe you could go to their website and check it out.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Christine, if you brush your tongue, check to see how nasty the tooth brush looks after. Mine kind of looks like dirty blood is on it . It's kind of brown looking then but if you look at the color before you brush, it's either dark gray or close to black.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | My tongue is dark brown to black. I haven't had any chemo or radiation. I'm wondering if
the prescription mouthwash they sent me home from the hospital with is causing my problem. I've tried brushing my tongue. So far no luck.
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
| | | | | Joined: Jan 2010 Posts: 1 Member | | Member
Joined: Jan 2010 Posts: 1 | Christine, Deb,
I have the same issue as Deb.
My tongue starts to tingle and go numb, and then I start to slur when speaking.
When I check my tongue, either the tip or, recently, just one side turns a gray colour. It looks like meat that's been in the freezer too long. Only about 1cm (1/2 inch) turns gray. Very off-putting.
After about 10 minutes, my tongue starts to hurt quite a lot, for a couple of minutes and then stops.
My tongue will then be it's normal red colour. It's not thrush but does seem to be circulatory in nature.
I only started to notice this on the 2nd January at Heathrow airport in London and it's happened only 6 times.
My doctor had no idea and had never heard of it (he even started calling it blue tongue which is a diasease of cattle!)
I have an appointment with my oncologist on the 21st Jan. Hopefully it's nothing serious.
Richard | | |
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